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First Step to Wellness is Mourning

Sunflowers are so cheery with their giant heads. And now you know I love magic puzzles 🙂

Reading this blog post from a Mighty contributor named Amber, I realized that I see this motif in the writing of the chronically ill over and over again. Then I started to get excited. Not because we all have to go through this terrible process with its 5 clear steps one can cha-cha back and forth through for years, but because I realized I’m one of the ones who finally has the privilege of understanding what’s on the other side and why being on the other side is a major advantage.

Like Amber, who has sjorgren’s, I too had to go through all the same steps to also make the same conclusions, but we each arrive at these in our own way. This is called mourning and that’s how mourning works. Most of us, like Amber and myself get mired down in the denial phase. This can be an especially long phase if you’re having difficulty being diagnosed, being denied diagnosis altogether, have a rare and/or contested disease within Healthcare/society and/or you don’t get any support from family and friends. I fall into all of these categories,  making for a particularly sticky wicket that’s further complicated by a history of childhood neglect, abuse and resulting issues with PTSD and severe self-esteem that were all too happy to be reawakened by the trauma brought about by illness.

As I began writing this a few weeks ago and only just rediscovered it (the fun of cognitive dysfunction; you find things you were working on of which you have no memory) I’m publishing this a bit out of order,  but it’s important, SUPER IMPORTANT so I still want to make the point: You have to get through this grieving process to be ready to move forward with life AS IT IS so you can BEGIN TO HEAL both EMOTIONALLY AND PHYSICALLY. I believe this 100% because I am living it.

For years all I did was decline, decline, decline, straight into a bedridden mess, no matter how hard I tried, no matter what advice I followed, no matter what regimen of supplements I took. Some of the things I was doing were the same things I am doing now. What changed most was that I finally accepted that I wasn’t going to find some quick fix or easy cure. I have a chronic illness and that will never change, whether they can give me a diagnosis or not. It will always effect my mobility. It will always cause me pain. It will alwsys hamper my ability to live, work and play and it will always threaten my very existence, just as it always has.

This realization and full acceptance has allowed me the freedom to stop fighting against my own body and instead begin to just observe and listen to it. Begin to respect it fir the boss it is; a big deal for a woman who has always been desperate for control (one of those not so lovely remnants of the past I never quite kicked). Only once I stopped trying to force it to obey my will could I really begin to understand what it might need. All those years of research and jumping from one thing to the next wasn’t going to do me a damn bit of good if I wasn’t respecting and listening to my body as a whole (this includes the mind and spirit as these things are inseparable).

My biggest mistakes?

  1. I kept missing the warning signs from my exercise intolerance and as soon as I started to feel better, I started walking, doing PT exercises, bowling and even occasionally sneaking in a good old fashioned hike (and there’s not a flat trail in the whole of Appalachia, let me rell you). Yes, some of it was doctor recommended, but it went against everything else I’d read on my condition.
  2. I kept missing what was or wasn’t effective because I was too impatient and trying too many things at once and of course doing too much activity and not only triggering my exercise intolerance, but injuring multiple joints every day.
  3. I was focusing on all the wrong things. As soon as there was the slightest improvement, I would begin to update my resume and job hunt, knowing deep down how ridiculous it was. Why? Because I wanted to prove to everyone else I wasn’t the lazy loser I felt they were judging me for. Because I felt like we needed me to for financial reasons and because I felt like it was my responsibility as an adult. I was worried about everything BUT my health.
  4. I was harder on myself than my harshest critics. I judged my own character for my body’s failings, every time. Each sign of physical decline was literally another nick to my self-esteem and steeped me further in my depression. I detested myself and no one could convince me that it was beyond my control.

Sadly, emotional stress is a huge trigger for autoimmune disorders of all kinds and I probably was contributing to the severity and length of my flare ups. I neither know to what degree, nor do I want to know. Measuring such things is tantamount to playing the blame game and I can’t afford to go back there….no, I simply won’t, not now that I’ve finally found my way out of that abyss.

As I discussed in yesterday’s post, I can’t say for certain which came first, the changes I came to in acceptance and pushing away my depression, anxiety and anger or if I just got lucky and my dysautonomia was healed enough for me to begin seeing reason again, but I do know I wouldn’t be where I am emotionally or physically without getting through this mourning process, reaching acceptance and being able to move forward in healing mind, body and spirit together.

Whatever can be said for Western medicine  (not much in my opinion anymore), they really need to eliminate the idea that the mind or body can ever fully be in harmony without the other. Eastern medicine has had a beat on that score for some time and they are dead on. Newer really doesn’t often equal better, a lesson that proves itself over and over again to me, especially in the realm of medicine.

If you’ve made it to the point of acceptance, congratulations! Not sure where to go next? Still need some help on getting to the next steps in your emotional development? Take a look at these posts Healing the Spirit or Affirmations and Effective Journaling for more ideas on what to do next.

Need help with symptoms? Take a look at this post What Got ME Out of Bed for some helpful solutions to common problems with a number of autoimmune illnesses.

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Affirmations and Effective Journaling

Editor’s Note: This post was last updated 8/20/19. Thank you.

The last two days have been incredibly productive. It’s amazing what one can accomplish once you’re willing to let go of the electronic babysitters and face your problems. It all seems so silly now, but I won’t allow myself to get mired down in why it took me so long to take this step. I can only say that for whatever reason, I am finally ready to begin dealing with the emotional consequences of my disability and I am very grateful for it.

I will say that I do not believe for even a second that this spiritual and emotional awakening arriving at the same time that I’ve made such strides in tackling my dysautonomia is in any way a coincidence. Being at the mercy of dysautonomia is every bit as much the psychological roller coaster that bipolar disorder seems to be (I have a good deal of experience dealing with people with this disorder, so I in no way make this comparison lightly).

We may experience things somewhat differently and the chemistry behind what’s going on may be somewhat different, but it is organic in both cases and entirely beyond a person’s control. No, they can’t just “calm down” and behave themselves like everyone else. Believe me, if they could, they would. They want to just as much as you want them to. No one wants to feel that way.

Dysautonomia and the depression, anxiety and anger that accompanies it is a big part of why I’ve come to feel such negative feelings about myself again. The slow changes I’m experiencing with these issues as my body heals are also how I’ve come to have a little pity for and patience with myself these past few weeks and have helped me to begin forming these new ideas and conclusions about myself. Improving my dysautonomia may have been the only way I could have begun this work in the first place, though I share it here in the hopes that others who also struggle with these issues may see their problem for what it is without having to go through it firsthand.

Need help improving your symptoms of dysautonomia? Check out my post: See Ya Tremors! Bye Bye Brain Fog!

Mind, body and spirit are inextricably linked and it is essential to heal each part to achieve wholeness; something we all desire in whatever modified definition we can come to accept. Like it or not, this is the life we have, the body we have, the mind and spirit we have. We get no other. We must do our best to care, love, nurture and cherish it for if we do not, certainly no one else will.

Journaling

Normally, I consider a journal to be a deeply private thing, but for the purposes of example, I wanted to share the first three pages (give or take) of mine. I set them up to guide my process and they include those things I seek to change about my thinking and my actions, or what I call my “core issues” along with statements I need to keep in mind, or my daily “reminders.” I follow these up with some daily “affirmations” that I am trying to memorize without much success and will more than likely have to print off and laminate instead to place beside my mirror. All three pages will be part of my daily regimen of self-care. Page one is my Reminders:

Remember

I like to start off with my reminders because it’s a mixture of both positive and negative and a good place to start. It isn’t all hard stuff to swallow, nor is it all sunshine and kittens. It’s realistic and things I need to keep in mind everyday no matter how I feel or whether or not I’m stuck in dysautonomic hell.

Each day as I review my reminders and core issues, I will take notes about my progress and record any thoughts I have had about them. I might add a new issue that has come to my attention or examine a problem I had or the way I reacted to something and why I think things happened as they did. Being highly emotive, I tend to work things out by talking them out, so I will incorporate ideas from conversations I have had with my husband or friends. I don’t ever take away issues, but I may explain that I feel they are taken care of for now. I don’t remove them, because most of them are lifelong problems, so I know somewhere down the line they are likely to rare their ugly heads again.

CoreIssues

Take a look at my chosen issues for some examples. You may have some similar ones and some different. It may take some time and honest soul searching for you to come up with your own. That’s OK. A journal is always a work in progress and should be private so you feel completely comfortable with being totally honest. Hopefully if you don’t have a therapist, you do have a friend you can be open and honest with that can help with some gentle suggestions. Don’t be surprised if you feel they are wrong or if you get really upset about it. Try not to comment if it does. Instead think really long and hard about it and ask yourself why you had the reaction you did. That’s where you’re going to find the answers you’re really seeking.

For me, this kind of work is the easy part. I’m a well trained monkey on the therapy wheel and once I’m prepared I have no difficulty with a level of emotional honesty that shocks most people, because not only am I aware of my flaws, I don’t really feel the need to hide them. What I do have difficulty with, still, is taking a compliment. Especially since my self-esteem is lingering in the s portion of the toilet right now, so sitting in front of a mirror telling myself I am beautiful inside and out and that people like me and want to be around me when I do not believe it is incredibly difficult for me. To be honest, I have yet to do it in a mirror, or above a whisper because it just feels like such a big fucking lie and I have a great deal of difficulty occupying that space.

Affirmations

I also find this to be the hardest document to share. In part because it shows how bad my self-esteem really is and makes me feel a bit vulnerable for it, but also because I have come to suspect as an adult that people take my quiet shyness as egotism and I have always found narcissism such an ugly quality, so I hate to publish a list of I statements about how fantastic I am when they are things that I actually feel the complete opposite about myself. This list could have been so much longer, but I caution you to pick only the biggest of your issues to begin with. You can always choose others later, once you’ve got a good hangle on these.

When doing daily affirmations, you really need to work your way up to doing them in the mirror (and not only coiffed and in makeup, ladies). Get used to looking at yourself and smiling and saying the words over and over again, every single day. Record them and listen to them. Over and over again until you truly believe them. The reason we do this is to replace old bad tapes we have all set up in our minds about ourselves. We may not even know they are there, but they are. They come up every time the subject comes up. We have to change that thinking one way or another and repetition is the best, most proven way to do it. I’ve done it before and it worked. I can do it again. So can you.

Finally, I wanted to provide a few useful guidelines for journaling:

  1. Pick a quiet, comfortable place where you can be alone with your thoughts.
  2. Choose the right implements. If you write faster than you type, write. If your hands hurt from writing, type. If you like to doodle while you think and then start writing, use an art pad and make it as creative as you want or use a regular journal and create all the marginalia art your heart desires. Whatever works best for you.
  3. If you need devices to assist you in writing or typing, get them. There are sheaths you can buy to go over pens and pencils, you can buy big fat pens, you can speak to type. If you do better talking out loud, try recording yourself instead so you don’t have to worry about editing for clarity. You can pick up a cheap recorder or use one on your laptop or cellphone.
  4. If you have busybodies in your life, protect your journal. Lock it up, password protect or fingerprint protect it. Put it in a hidden folder. Do whatever you have to do to ensure your privacy. It doesn’t matter how close you are to your spouse/best friend/roomie, there will always come a time when you want to write about something you don’t want to share and that’s your right!
  5. Free-writing is great some of the time and works great for some, but others need structure. If you find yourself going in circles or just getting more upset, look into journaling guides and workbooks, like those I selected for another post, here. There are a lot of them out there. You can also find exercise examples on many blogs on a variety of subjects.
  6. Take advantage of inspiration when it hits. Just finished watching a movie that had some parallels to your life? Wonderful! Journal about it to help unlock the full potential of that experience!
  7. Don’t use your journal to rehash every wrong that’s ever been done to you. Sometimes you need to use it to examine a particular experience, especially if it just occurred, but try to keep it rooted in understanding your own reactions and motivations and NOT THE OTHER PERSON’S. Also try to avoid perpetuating bad feelings. Look instead for resolutions and take aways: Why did I react like that? How could I have done things differently? How might I approach or possibly avoid a similar situation next time?
  8. Review your journal regularly to look for patterns of behavior and opportunities for improvement. After all, the whole point is to make your life better, happier and more workable for you! What’s the point of writing these things down if you’re only going to ignore them later?
  9. Never use your journal to berate, belittle or chastise yourself. Remember, we are all inherently flawed and that’s OK. We’re going to make mistakes. We’re going to slip up. That doesn’t define who we are. It’s how we deal with those errors that really counts and being hard on yourself about it only makes your life harder and your shame about it grow. Learn from the experience, change from it. It’s the best thing you can do for yourself and all anyone can ever ask of themselves.

Resources and Related Materials

This post discusses my mental health journaling strategy and includes a number of tips on pitfalls to avoid along with some ideas of how to accommodate disability and still enjoy its benefits.
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Healing the Spirit

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I realized recently that I have some hard truths to face and that those of the medical variety are kind of the least of it. After all, I’ve been living with my illness for a long time now, whether I’ve known what to correctly call it or not. Yes, it’s been a bit of a mind-fuck to contemplate changing the name of my disease and how I care for and protect myself (yet again). Yes, it’s been very difficult realizing that many of my behaviors over the last 20 years has caused permanent damage to my body and I have lost mobility I can never get back because I listened to idiots (many of which who have medical degrees) who assured me that being active would not come back to haunt me in my later years. Yes, I am afraid that this is probably the best I can ever expect my mobility to be ever again. I mean, fuck. Who wouldn’t be upset by all this? There is a whole truckload of upset on each subject alone. Still, the atrophy of the physical self hasn’t caused the dragging-me-down-so-I-can’t-sustain-that-fake-ass-smile-for-longer-than-10-seconds-without-toothpicks-propping-up-the-corners-of-my-mouth kind of miserable; it’s the severely stunted emotional growth that somehow came along with it.

My first clue? I can’t stand to be alone in a room with myself and will make any and every excuse not to be, for oh—the last 8 years, give or take. I fill my time and my mind with anything and everything I can to not have to think about my life, my fragile mental state, the constant inner turmoil, the tears I’m constantly holding back or the deep well of loneliness and terrible abandonment issues I’m refusing to address. I read, I listen to books, I research, I chat, spend hours in support groups on other people’s problems, shop on the internet at the level of obsessive pro, watch hours of stupid television shows I care nothing about, watch makeup and nail polish tutorials and experiment with the gobs of crap I have shipped to my home. I spend countless hours perusing stupid memes on Facebook which I like and share and comment on and tweet and blog and on it goes until there is no more I.

I do these things so I don’t have to think about the family and friends that pushed me away and I pushed away in this maniacal game of reverse tug of war, how much I loved them and how much that love hurt. I do these things so I don’t have to think about the kids I could never have and weren’t allowed to adopt. I do these things so I don’t have to think about how my self-esteem wasn’t quite as strong as I thought it was when everyone walked away and the accolades in my professional and academic life dried up.  I do these things so I don’t have to think about how every community of which I was ever a part slowly turned its collective backs from me in silent agreement that because I am homebound and disabled I no longer count. I do these things so I don’t have to try to figure out how to make peace with being a people person forever without a people.

My avoidance of these things is only perpetuating my inability to let go of them. I know this from my extensive experience with therapy, interpersonal growth and overcoming a childhood filled with neglect and abuse. Knowing this doesn’t always make it easier to get to work, though. If anything, all those childhood problems have co-mixed and intermingled with the emotions brought up by my disability,muddying the waters and making it very difficult to tell where one problem ends and the others begin. Am I rehashing old issues or are they new? Are they rooted in old bad habits and I just need a tune up (a few reminders) or do I need to start from scratch? These are questions I ask myself from time to time, feeling like I’m getting somewhere, even reaching understanding, but sometimes this knowledge seems obtrusive and even unhelpful because yes, I know the theories, but it doesn’t always help me get them into practice.

Another big problem with making any strides in my emotional health since I’ve become disabled comes from the nature of my illness and dysautonomia. Some of what I deal with is organic. How do I know when what I am feeling comes from life circumstances or is being heavily influenced by my dysautonomia? Sometimes I do, sometimes I don’t. Panic is clearly felt. Anxiety is sometimes clearly felt. Depression has layers. Sometimes I need objective help to see it clearly and it’s really not conducive to work on my emotional health when I’m in the grips of an organic episode.

Certainly it would help to have professional help figuring some of this out, but I live in an area where there is a massive shortage of qualified counselors. It takes months to years to see a counselor. Every time I get on a list by the time I get an appointment, either my insurance has changed or the provider no longer takes it. I can’t win. It’s truly ridiculous and impossible to get help unless you are ready to do harm.

Waiting for an appointment with a practitioner here has just become another stall tactic. I have to take things in my own hands and I know I have the tools I need to do it. I’m beginning by clearing away the distractions. No more Facebook or twitter except for blog interactions. Therapeutic art projects only. No more shopping (my budget will thank me) or unnecessary TV viewing. No more endless hours of meaningless chats or help sessions for other people.

In place of these old bad habits, I am once again taking up my regular meditation practice which I know is good for both my emotional and physical health. In addition to this, I have been seriously considering my spiritual health and the many stupid reasons I allowed it to lapse and the ways I want to embrace the natural and spiritual world again.

One tool that has always been key to my emotional health is journaling. It’s how I came to writing in the first place and it’s how I originally found positive emotional and spiritual health and wellbeing. I will write everyday on a topic that I’ve been struggling with, dissecting it and trying to understand what it is that I’m getting hung up on about it and how to move forward in my thinking about it. What ideas can I replace it with? How can I shape my life differently or what things might I look forward to or find rewarding instead? Those kinds of things.

Another thing I can do is look for information about these subjects from other people who have struggled with the same issues. Maybe they have a unique perspective that I’ve been missing or some insight that will help me, too. I may not have access to a professional, but there are plenty of resources to be had out there, including some workbooks and other options that might help me on my journey.

At this point, I am dedicating myself to spending some time every day on meditating, journaling, or doing some sort of therapeutic art. Anything that will provide me with the head space to think about my life and put it fully in perspective, learn to be alone with myself again and actually enjoy it. To learn to like myself again, because I just realized that I really don’t and that tells me just how dire I’ve really let the situation become.